Comments of the Statewide Parent Advocacy Network on the New Jersey

Comments of the Statewide Parent Advocacy Network on the New Jersey

Home and Community Based Services Transition Plan

The Statewide Parent Advocacy Network (SPAN) is New Jersey’s designated Parent Training and Information Center for families of children, youth and young adults with disabilities (up to age 26), and the Family to Family Health Information Center for families of children, youth, and young adults with special healthcare needs. We also house the National RAISE Transition Technical Assistance Center and the REACH for Transition Regional Transition Center, assisting youth and young adults with disabilities to make effective transitions to post-secondary education, competitive employment, independent living, and community and civic participation.

SPAN strongly supports New Jersey’s Transition Plan and applauds the New Jersey Department of Human Services for its far-reaching and comprehensive plan, particularly the following:

· The plan outlines incentives that the state will provide to increase the availability of non-congregate settings, in recognition of the fact that New Jersey is still a very disability-segregated state and that there is a need for a significant increase in the availability of community integrated, non-disability specific settings.

· The plan requires the Division of Developmental Disabilities to have a DDD staff person familiar with each setting conduct a site specific evaluation of every licensed residential setting including whether there is compliance with the rule for each individual served.

· The plan will ensure that all new congregate settings have a level of service of no more than 4 individuals. We particularly commend the state for setting forth specific standards for the size of congregate settings that will make congregate living situations more integrated, particularly the fact that no more than 25% of units may be set aside for people with disabilities. This is critical in order to move New Jersey from being a primarily segregated system for adults with disabilities to being a more inclusive system. We also appreciate the recognition that current regulatory and licensing requirements will need to be revised to comply with the rule, including landlord-tenant protections.

· The plan recognizes that once the site-specific assessments are completed, the results will have to be incorporated into the statewide transition plan and presented for public comment.

· The plan also recognizes that person-centered planning requirements are a critical piece of the HCBS rule. The plan would be improved by clarifying that the person-centered planning provisions are in force now, and not subject to the five year transition period. The plan would also be improved by clarifying that the Special Terms and Conditions and MCO Contract language will be revised with respect to person-centered planning to reference compliance with the HCBS rule.

SPAN recognizes that many families are concerned about the proposed transition plan. It represents significant change, and change often brings fears that the unknown, while well-intended, may be worse than the existing, even if there are problems with the current system. However, as a civil rights organization, and an organization committed to the full equality and inclusion of people with disabilities in our society and communities, we cannot give in to those fears. Rather, we must fight to ensure the civil and human rights and dignity of individuals with disabilities, and fight to ensure that the new systems meet their needs.

We do have some additional recommendations for the plan. We recommend that the state:

· Provide additional forums for people to comment, including in-person, in writing (including via email), and on the phone;

· Survey consumers to get a more accurate assessment of whether current settings comply with the HCBS rule. Any provider self-assessments must be developed with stakeholder input, and must be validated by a survey and/or focus groups of consumers because self-assessments by service providers cannot be objective, nor are service providers necessarily in a good position to make judgments about whether and how consumers have access to the community and can exercise their rights;

· Provide a mechanism to request on-site evaluations of Assisted Living settings in addition to the proposed random surveys, if DOH resources prohibit evaluating every AL setting in addition to every licensed residential setting;

· Subject those assisted living facilities that have institutional qualities to heightened scrutiny (for example, they may share a campus with nursing homes or have multiple locked units);

· Ensure all landlord-tenant protections in Assisted living settings, including protections from eviction and appeal rights;

· Increase capacity in the MLTSS programs so that individuals are provided a choice of settings, including a choice of non-disability specific settings and private rooms;

· Add mechanisms to protect participants who may need to transition from providers who cannot meet the requirements of the rules, and to allow participants to complain about their setting or the designation that it meets the requirements of the rules; and

· Include Adult Day Health Services in the HCBS rule, at least ensuring that they provide person-centered planning.

In closing, SPAN again commends the Department of Human Services for its visionary plan and encourages advocates for the civil and human rights, dignity, and self-direction of people with disabilities to work with the Department to strengthen the rule and help New Jersey become a leader in the field of disability inclusion, not the bottom of the barrel.

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